Thursday, January 28, 2010

Something strange happened tonight.

I've been reading the book SIXTYFIVE ROSES - A SISTER'S MEMOIR. It's about a woman named Pamela who was born in the 1950's with Cystic Fibrosis. The story is told by her sister Heather, who recounts their life together in rural Canada at the beginning stages of "treatment" for CF, and the incredible feat of Pam living into her late 20's. It's a beautiful memoir and of course very difficult to read. I sobbed several times, held the book to my chest, wiping my eyes before I could continue.

Even though the story is told from the perspective of the sister, I couldn't help but relate to the mom. This CF mama raised two children with CF and two without, did manual CPT 2-4 hours a day, changed and dried the sheets every day from her daughter's mist tent, baked, cooked, cleaned, polished, mended, went back to school while her daughter was dying to acquire her nursing degree and basically took over her end of life care. Their family started outreach and education in Canada for CF research and started support groups for other CF families. They worked from sun up to sun down to keep their CF kiddos alive, to raise money, awareness and education. Their dedication was beyond parenthood. It was celestial, and I can only hope to be that strong.

As difficult as it was to read, I was able to distance myself a little due to the progress in CF treatments. It was necessary for me to say, "things have changed, it will be different for Froggy."

But I could absolutely relate to Heather's feelings of a fleeting life, her anger, frustration, feelings of putting her life and career on hold, struggling with spirituality, and eventually finding a peace in the acceptance of "surrendering."

Wander with me for a moment...

Today Froggy and I spent the afternoon at the Getty Center. She rolled down the grassy lawn, climbed the boulders, played in the fountains, was reprimanded by the security guards for doing these things, ran through the garden, made a friend, and had a fabulous Froggy time. Afterwards, we stopped at Trader Joe's for groceries and Froggy asked the manager for a pink balloon. He of course obliged. How could he say no?

While I prepared meds, treatment, and dinner, Froggy played with her pink balloon. She bopped Buddy on the head, ran through the house with the dog chasing her, tied her stuffed animals to it, and was sad to part with it when going to bed.

After rocking Froggy to sleep, I sat on the sofa and continued reading this book. As I reached the very last sentence of the book, the pink balloon that was filled with helium, floating on the ceiling, fell all the way to the floor. It wasn't a gradual fall, it was as if the air had suddenly gone out.

The book ends with the death of Pamela. The very last line is "I have learned that no matter what misfortunes or joys one may be faced with - life will surely go on... with love. -Pamela Gaye Summerhayes 1954-1980.

FD and I watched the pink balloon fall to the floor and felt that sensation where you know something has taken place. Today was one of those perfect days, overlooking the city, the bird's eye view of LA, the beach and mountains. We road the tram, giggled in the fountain, ran through the garden, watched deer grazing on the hillside. It was a perfect day.

I know there is more. That life does not end when our bodies do, when the helium is let out of the balloon. We keep going somewhere that overlooks the city, where ocean and mountains are within reach, and kids roll down the hills, play in the fountains and touch the sculptures without ever being reprimanded. I know this in my heart. But every once in a while, it is nice to be reminded.